Saturday, June 09, 2007

just when thought you'd be spared the emotional garbage....

"First day on your new legs?" The comment should have been harmelss enough but for some reason tonight it stung. I walked over to my little girl, helped her up and asked if she was ok. It was the same as so many times on so many days. "I ok" was her answer. The same as always. But she's not ok and it breaks my heart that I can't fix her, that I can't make things better. Some days she falls alot, some days not so much. We think that she's having simple partial seizures but until the EEG no one really knows. I see it in her eyes on the bad days. She'll hold my hand more, and refuse to go up or down the stairs without help. A fall down the hard wooden staircase taught her that lesson. It's interesting how she would quite happily run into traffic without pause but understands the danger of an innocuous set of stairs. I feel angry. I wish I had pushed things with the dr.s in Edmonton to get a proper diagnosis. I'm angry that a family member never shared her suspicions. It really bothers me that she brings it up after the fact. If she had once mentioned her concerns to me I would have been able to do something. I'm angry with myself. I have a psych degree and 2 1/2 years of nursing. I should have known, but I didn't. When I went to school we were taught about autism-the disorder. The fact that it is a spectrum of disorders with a whole variety of traits was never mentioned. I'm tired. Tired of the sleepless nights. Tired of having little support and no where to turn. Tired of the politics in this town. Tired of the waiting process. We have a tentative, but probable diagnosis and a tonne of referrals but no answers. It's too late to initiate any sort of early intervention and the longer we wait the harder things become. And yet, waiting is all we can do. It's funny, when i reread what I've written, it sounds pretty negative. But, while I'm honest in how I'm feeling, we're doing OK. The kids are happy, T and I are still as strong as ever. I guess that's what families do. You weather the storms and wait for the sun.

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